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Breaking news on the Alzheimer’s disease treatment lecanemab! Today we’ve heard important decisions from two UK regulators, MHRA and NICE. The MHRA, who review safety and effectiveness, have approved lecanemab for some people with early-stage Alzheimer’s disease. This is welcome news and the very first time an Alzheimer’s disease treatment that appears to slow progression has been approved. However NICE has not recommended the drug for use on the NHS for any patients as it doesn’t meet their criteria for clinical and cost-effectiveness. This is disappointing and will be disheartening to those who may be eligible for treatment and have been waiting a long time since promising trial results were first announced, but we respect the decision the regulators have made. So what happens next? Firstly, a drug for Alzheimer’s disease has never gotten this far. The MHRA’s decision to approve lecanemab is a defining moment and offers hope for many more potential treatments that are currently in the pipeline. There will be a month-long consultation on this guidance and a final decision made afterwards at a later date. The NICE recommendation reflects the urgent challenges which must be addressed regarding how we diagnose and treat people with dementia. A third of people affected by dementia have not received a diagnosis, and for those who have been diagnosed, it’s often not early or accurate enough for a person to be eligible for new treatments. Now more than ever, we are calling on Governments and health systems across the UK to prioritise dementia by improving early diagnosis in order to deliver ground-breaking treatments at scale.

Professor Karen Windle

Professor of Applied Ageing and Dementia Research, Centre for Applied Dementia Studies

2mo

It may worth be highlighting that while 70,000 people with an early diagnosis of dementia may be eligable, that's still only 7% of people living with dementia. Also, we know that this drug carries a range of extremely serious side effects (brain swelling and bleeding as well as mortality). While Lecanemab is promising and, it is hoped that we will move forward with drug development, the challenges with our infrastructure (e.g., limited dementia pathways, the ongoing monitoring of patients limitiing how many can recieve the drug), the long waiting lists for diagnosis (as well as challenges with misdiagnosis) does indicate that full availability needs to be discussed.. The difficulty, of course, is that this has now become a two-tier drug. Those able to afford early diagnosis and, access to Lecanemab privately able to take advantage.

Dr. Carol Sargent

Creating a social shift where dementia and other disabilities are no longer seen as the end, but a new phase, in which a great deal of life can still be lived

2mo

I think it critical for the Alzheimer's Society to provide a balanced perspective on this decision and clearly support the need for additional research to understand the long term efficacy and adverse effects of this drug. They should be leading a more transparent discussion about who is eligible to take this drug. Only 30% of Alzheimers patients recruited for the clinical studies of this drug were allowed to be given Lecanemab. The rigorous entry criteria for these clinical trials were to reduce the known side effect with this type of drug. More research is needed to see if more than 30% of Alzheimers patients can safely take Lecanemab, alongside more data on the benefits with longer term useage of this drug. We need to be realistic about who can be prescribed this drug before too many people spend a lot of money on private medical consultations for a drug that is not safe for them to take. The decision by NICE is in line with the decisions made in the USA and Japan who requested more data. Its exciting, but lets be realistic about getting more information.

Jon Davis

Passionate about hire? Let's talk.

2mo

My dad has alzheimers, and if I'm honest, it's a soul destroying illness to watch someone go through. All I can say on this announcement is that watching yet another two tier system for a "ground breaking" drug unfold, is a sad state of affairs and to be quite frank, a crime against the general population. It either needs to be approved for all, or none.

Peter Middleton

Living with Young Onset Dementia

2mo

Thank you for your clear and concise snapshot of the state of play. I know of no-one in the dementia community who would be remotely interested in Lecanamab. It's a great step forward, but the risks and cost are definitely not worth the scant rewards. IMHO NICE has made the right decision on this one. More money needs to be spent on dementia, but it needs to go where the dementia community will benefit the most. I'd rather see more money for scanners and biomarker technology research allowing earlier, more accurate diagnosis andmore practical support for carers and community projects. A 30% extension of the length of my journey into dementia is not something l'd spend tens of thousands of pounds to achieve. The QUALITY of my life is more important to me than its QUANTITY!

Gail W.

Dementia and end of life doula

2mo

The trouble is so many people are in or go in denial of the disease getting everyone diagnosed early is the key but how? The waiting list even after suspicion is too long .. Awareness has to be one of the major factors...there is a huge fear of the disease out there and personally I'm not surprised .

Lynn James

Company Director at Visiting Angels North Surrey

2mo

I’ve been involved in dementia care for 35 years starting at a time where the emphasis was around caregiver support rather than the experience of the person with dementia. We’ve come along way in the way we treat people with dementia since then , and I even remember the arrival of Aricept which as an additional benefit forced the approach of actually consulting people with dementia directly . I’m hoping with all my heart that before I retire , that medication that slows down the progression or even stops it will be available for people experiencing with dementia. Maybe we’ll even understand what causes it so that we can prevent it even starting.🤞we need to keep the research going

Gurpreet Singh

Home Support Worker - Caregiver

2mo

As a Personnel Support Worker, I’m deeply encouraged by the progress being made in Alzheimer’s disease research. The approval of lecanemab by the MHRA is a significant step forward, offering hope for those affected by this devastating condition. While I understand the complexities of NICE’s decision, I hope that a solution can be found to make this treatment accessible to those who could benefit from it. It’s essential that we prioritize early diagnosis and support for people living with dementia. I’m committed to advocating for improved care and support for individuals and their families affected by Alzheimer’s. Together, we can make a difference.

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Nicolette Kelleher

Buyer | Account Manager | Commercial Strategy

2mo

Thank you for this update. I understand the reasons for this not being suitable on this occasion as you said, it is for anyone who knows a loved one dementia and dementia is a very complex brain disease. My biggest ask to factor in is a lot of drugs that are on the market or being developed are more harmful for people with kidney problems. I know developing a drug is not at all easy, let alone for the many forms of dementia / alzehimers. It is more a reminder please think heavily about kidney function when developing any drug, especially ones that is focused on terminal illnesses for people over the age of 65 who have a decreased kidney function. Thank you for everything the researches do and continue to do

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It’s shocking the same thing happened in 2006 - 2007 a member of our Carers group went down to Parliament and with all the information of the drug and was told it was only available for Private medical not NHS. It’s despicable that it has happened again as people are now getting dementia younger than they were back then. Why is this possible when more and more are diagnosed with this?

£19,000 per year for a patient is disheartening to know as a figure that outweighs a life. However I wonder the most cost-effective ways to help fight outsiders is by not allowing it to get a foothold from the outset. So perhaps an awareness campaign surrounding oral health might be efficient in stopping people contracting Alzheimer’s.

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